Is there a link between age-related vision and hearing impairment and dementia? It’s a question that a team of trailblazing researchers, led by Professor Iracema Leroi, are exploring as part of the SENSE-Cog project, a ground-breaking initiative, which is being funded by the European Commission.
Professor Leroi, who I have known for many years, began studying the relationship between the eyes, ears and mind at the University of Manchester six years ago. We met when I was working on a study into the use of cognitive rehabilitation for people with dementia and she approached me to find out more about how the QCS PAL Instrument could be utilised in the SENSE-Cog study. I created the PAL instrument over two decades ago, and have recently taken to a new level with the help of Quality Compliance Systems, the leading provider of content, guidance and standards for the social care sector.
SENSE-Cog project
Professor Leroi continued researching the link between vision, hearing and cognitive impairment, which led her and a team of 28 researchers from several different disciplines to put together a proposal, which was approved by the European Community. The result was the SENSE-Cog project. The initiative – which was awarded nearly seven million Euros in funding over five years and is spread across nine countries – looks at various elements of vision and hearing impairment and their relationship to dementia.
Leroi, who has since joined Trinity College Dublin’s Global Brain Health Institute (www.gbhi.org), where she has continued the pioneering SENSE-COG study says that “with approximately seven to ten Europeans over the age of 65 living with sight or hearing problems and over two thirds living with dementia, the cumulative impact is far greater than that of individual conditions alone”.
Certainly, having supporting those living with dementia for over two decades, it is very clear that hearing and vision impairment are highly prevalent as people get older – as is cognitive impairment, which in some cases, leads to dementia. SENSE-Cog’s work is revolutionary, however, as it will not only try to validate whether a myriad of sensory impairments accelerate cognitive impairment for those with dementia, but will have a positive real-world impact on the quality of life of people living with the condition in care homes in the Republic of Ireland.
SENSE-Cog trial poses important questions
The innovative research also poses two additional questions. The first is, if the trials establish a clear link between cumulative sensory impairments and dementia, can dementia be slowed down by correcting vision or hearing loss? Secondly, to what extent can correcting middle aged hearing loss reduce the risk of a person developing dementia at later stage in their life?
In answer to the second question, Professor Leroi says retrospective data extracted from large-scale longitudinal studies of ageing, by SENSE-Cog co-researcher Dr Asri Maharani, shows that when hearing aids are introduced the rate of cognitive decline appears to slow down a little, and a similar pattern emerges for people who have had cataract surgery.
Professor Frank Lin, the Director of the Cochlear Center for Hearing and Public Health at John Hopkins School of Public Health in the United States, is currently conducting a real-world study. He is looking at a prospective trial of those who did and did not receive hearing aids to see whether those at risk from mild cognitive decline progress to dementia at a slower or faster rate depending on whether they have hearing aids or not.
SENSE-Cog research
But back to SENSE-Cog and Professor Leroi’s research – the results of which will be announced in San Francisco in July. It began five years ago – was briefly halted by COVID-19 and includes a large consortium of investigators – including epidemiologists, clinical researchers, bar statisticians, economists, audiologists, vision and sight experts, geriatric psychiatrists, occupational therapists and psychologists. The research work was divided into five separate work packages: Exploration, Assessment, Intervention, Evaluation and Involvement.
For the first body of work, SENSE-Cog’s epidemiology team studied a range of studies including the English Longitudinal Study of Ageing, the Rotterdam Study of Ageing and the Health and Retirement Study (USA).
The second study (assessment), which is still running, is very exciting. It is looking at how commonly used tools and rating scales can be used to assess people with dual or triple impairment – including cognitive impairment. I say exciting because the QCS PAL Instrument, is one of the tools that the SENSE-Cog team evaluated and approved for use to assess the functional ability of those with sensory impairments. In case you’re not familiar with the QCS PAL Instrument, it provides a highly effective framework to help professionals assess the level of functional ability of clients with cognitive impairments. The instrument assesses those living with dementia on four levels: Planned, Exploratory, Reflex and Sensory. I’ll talk more about the how the PAL tool might be used to good effect later in the piece.
Controlled Clinical trial
The third work package is perhaps SENSE-Cog’s biggest and most ambitious. It is a randomised controlled clinical trial, which ended in January. Currently, the SENSE-Cog team is analysing the results with a view to publishing them next month (June). The trial, which was randomised and lasted 36 weeks, involved 250 participants in five different countries. Each person was living with dementia and was being cared for by a care partner at home. At random, half of the participants were either given a hearing and a vision rehabilitation package and half were not.
It’s important to add that the clinical trial that Professor Leroi and her team have been working on is complex and multi-layered. It is not just about giving some people glasses and hearing aids. Firstly, the hearing and vision capabilities of every participant is carefully assessed. Then a sensory therapist visits the home and ensures that the person living with dementia and their care partner are using the equipment correctly.
On the surface, it may seem that employing the services of a sensory therapist is unnecessary, but believe me, it is. When I began my career as an occupational therapist, I realised very quickly that the majority of people with some form of cognitive impairment really struggle to use hearing aids correctly. Unfortunately, the hearing aids often end up down the back of a sofa, or hidden away in a drawer. The devices are fragile and can easily develop sound malfunctions or become clogged – unless they are regularly checked. Therefore, Professor Leroi’s team sent sensory therapists to support people with dementia and their care partners to learn how to use new devices, change the batteries and to find solutions to more person-centred issues such as a person not wanting to use a hearing aid.
Glasses
Encouraging a person with dementia to wear glasses is less of an issue. When I used to visit care homes, I found that the two major challenges were people losing their spectacles and forgetting to clean them. In regard to the first point, I would always encourage people living with dementia to put their glasses in the same place when they removed them. This small intervention helped them to more always find their spectacles. Secondly, it quickly became evident that often the lenses became very dirty. So, whenever I would visit care homes, I would sit down with people and I would ask them if they needed help cleaning their spectacles. It became an activity which they really enjoyed. But, of course, the simple act of supporting them to clean their glasses helped them to see better and changed the way they interpreted the world.
It will be exciting to see the results of the trial when they are published in June, but a series of small field trials have given the SENSE-Cog team a positive signal that if sight and hearing are enhanced, their quality of life improves and the care burden is reduced. Professor Leroi maintains, however, that it is vitally important to wait for the results of the large scale trial before drawing any concrete conclusions.
New study
Professor Leroi and her team were also conscious of the fact that the much of the research involved participants being cared for at home. The SENSE-Cog research team were also keen to find out how those with multiple cognitive impairments living in care homes were affected. Therefore, it began a new study entitled SENSE-Cog Care in November 2021, which measures the impact of sensory impact rehabilitation intervention in Irish and Australian care homes.
When you consider that in Ireland alone, 75-90 percent of the 55,000 people who are living with dementia live in care homes in Ireland have significant hearing impairment, while 40 percent suffer from vision impairment, it is obvious that a study of this magnitude is both welcome and long overdue.
So, what are the scope and limits of this study? To directly quote the study literature, it will look at “four inconsistencies in sensory healthcare for residents with dementia”. They are “a lack of awareness of sensory impairments by care staff”, “Inadequate detection of sensory loss and referral for specialist care”, “inconsistent implementation of rehabilitation approaches and adherence to sensory devices” and “a lack of ‘sensory friendly’ environments”.
Professor Leroi and her team have divided the intervention into several phases. The first step is to assess all the residents and provide those who need them with hearing aids and glasses. This is absolutely crucial when you consider that statistics show that fewer than 15 percent of residents with dementia and visual and hearing impairments receive hearing aids or glasses.
QCS PAL Instrument
In regard to using the QCS PAL Instrument to assess resident’s cognitive and functional abilities, the SENSE-Cog team has yet to finalise its outcome measures. But I would be both delighted and honoured if the QCS PAL Instrument were to be used in the intervention. Certainly, I believe that it could add great value in understanding the level of a person’s cognitive function. If it is used in conjunction with other tools, such as the Montreal Cognitive Assessment (MoCA), a test which helps to detect for mild cognitive impairment, it could perhaps be used to establish a person’s baseline ability across a number of sensory impairments, enabling the team to design a bespoke intervention.
Assessment aside, the second level of research addresses the staff knowledge gap and raising awareness of the issues that those with dementia face. The SENSE-Cog team is therefore recommending that each of the ten care homes that are participating in the study in Ireland appoint a Sensory Champion.
Sensory health training is key
Training staff and making them more aware of the importance of sensory health is absolutely key. That is not just about supplying people with fully functioning hearing aids and glasses with the correct prescription. Most importantly, it is about educating staff to recognise a person’s right to communicate with others and understanding how narrow that world becomes if they cannot see or hear properly. I am delighted to be working with the SENSE-Cog Residential Care study team to support Sensory Champions with use of the QCS PAL Instrument which not only provides guidance on interaction and meaningful engagement at different levels of cognitive ability but also provides tips for creating enabling environments.
Professor Leroi and the SENSE-Cog researchers are also looking at the environment in which residents with dementia are living in. They will assess the extent at which the ten residential homes are sensory friendly ecosystems, something which is often overlooked. When I worked for Sunrise Senior Living Homes as the Director of Memory Care, creating the right sensory environment for both service users and staff was one of our primary goals. That means an environment where television and radios are not too loud, and one where the acoustics and lighting are finely tuned to the meet needs of those who live there.
Finally, Professor Leroi and her team will ensure that the care homes involved in the trial are linked in to dedicated audiology and vision care pathways that can be easily accessed.
Currently the SENSE-Cog team are at the consultation stage, which when completed will pave the way for a randomised cluster trial. It will include care homes who are in the intervention and those who are not. The hope is that this in turn will lead to a definitive trial, which will one day lead to wide-scale implementation and policy change.
When you take into account that by 2045 around 60,000 of the 150,000 people expected to be living with dementia will be in residential care, the results of pioneering research like this can’t come soon enough.
You can now download the PAL Instrument for free here
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By Jackie Pool, QCS, Dementia Care Champion. With Professor Iracema Leroi, Associate Professor of Geriatric Psychiatry, Trinity College Dublin
